The Down Syndrome Association of Wisconsin commends Governor Evers’ proposal to allocate a portion of state surplus revenues to individuals with disabilities and their families.
Advocacy Alert: Important Disability Legislation
Important disability bills are advancing through the legislature but need a final push from disability advocates like you before they can be sent to the Governor and signed into law! Read about these two important bills and how you can help below!
Equal treatment of reports of abuse and neglect (SB395/AB 400)
The state Senate passed its version of the bill Monday October 25th!
Now the state Assembly must schedule a floor vote and pass SB 395/AB400.
What does this bill do?
This bill makes a technical change to make sure reports of abuse are equally investigated regardless of a person’s age.
Current law required Adult Protective Services (APS) to investigate reports of abuse for adults 60 and over.
Current law allows counties discretion on whether to investigate reports of abuse for people ages 18-59 living with disabilities, known as Adults at Risk
Bill has no fiscal impact
How to help:
Call Rep. Jim Steineke, Assembly Majority Leader and Chair of Assembly Rules Committee, at (608) 266-2418 (Rep.Steineke@legis.wisconsin.gov)
Call Rep Robin Vos, Assembly Speaker Assembly Majority Leader and Vice-Chair of Assembly Rules Committee, at (608) 266-9171 (Rep.Vos@legis.wisconsin.gov)
ASK THEM TO SCHEDULE AN ASSEMBLY FLOOR VOTE FOR SB 395/AB 400 THIS FALL SESSION
Thank your state Senator for passing SB 395
Improve access to ABLE savings accounts (SB 158/AB 167)
The state Senate passed its version of the bill June 9th!
Now the state Assembly must schedule a floor vote and pass SB 158/AB 167.
What does this bill do?
Direct the state to study establishing a Achieving a Better Life Experience (ABLE) program so people with disabilities and families can earn and save more either directly or by entering into an agreement with another state or alliance of states
This bill will take concrete steps to make ABLE accounts more accessible for Wisconsin families.
ABLE accounts allow people who have a disability that developed before age 26 to have a tax-exempt savings account set up to cover allowable expenses (like transportation, assistive technology, personal support services, education, etc.).
ABLE accounts do not affect eligibility for Supplemental Security Income (SSI) or Medicaid.
Bill has no fiscal impact
How to Help:
Call Rep. Jim Steineke, Assembly Majority Leader, at (608) 266-2418 (Rep.Steineke@legis.wisconsin.gov)
Call Rep Robin Vos, Assembly Speaker, at (608) 266-9171 (Rep.Vos@legis.wisconsin.gov)
ASK THEM TO SCHEDULE AN ASSEMBLY FLOOR VOTE FOR SB 158/AB 167 THIS FALL SESSION
Advocacy in Action
Advocacy in Action!
Dawn and Abby at the Capitol!
DSAW advocated for the rights of people with disabilities at the Capitol earlier this month! DSAW’s Executive Director, Dawn Nuoffer, and her daughter Abby spoke directly to the members of the Assembly Committee on Health regarding Assembly Bill 539. They expressed support of the bill from DSAW and other disability organizations in the state like Wisconsin Board for People with Development Disabilities, Survival Coalition, Save IRIS, National Down Syndrome Society, Madison Area Down Syndrome Society, and more.
What is Assembly Bill 539?
Assembly Bill 539 relates to prohibiting discrimination in organ transplantation on the basis of disability. This bill clarifies that doctors, hospitals, transplant centers, and other health care providers are prohibited from denying access to necessary organ transplants solely on the basis of a qualified individual’s disability. Additionally, this bill requires that, when evaluating the likelihood of a transplant’s success, health providers consider the full range of supports available to help a person with a disability manage their post-operative care. The bill also includes a fast-track procedure for challenging discrimination to ensure that people in urgent need of an organ transplant obtain timely resolutions to their claims.
Update: Bill 539 passed both the assembly and senate unanimously! The bill now needs approval from the governor to pass.
Does this type of discrimination happen?
Although federal and state laws prohibit organ transplant discrimination, people with disabilities are often denied equal access to organ transplants because of discriminatory assumptions that their lives are of poorer quality than those of people without disabilities, in addition to misconceptions about the ability of people with disabilities to comply with post-operative care. A study by Stanford University showed that 85 percent of pediatric transplant centers consider intellectual or developmental disabilities when determining eligibility for transplants. Additionally, 71 percent of heart programs also consider disabilities as a factor.
Abby speaking to Assembly Members
Self-Advocate Spotlight: Abby
During the committee meeting, Abby Nuoffer gave a moving appeal. She spoke to her experience as a self-advocate and made sure the assembly members knew that if she needed life-saving surgery, she should have the same access to organ donation as her typically-developing peers. We are so proud of Abby’s great representation of people with Down syndrome and her willingness to use her voice to advocate for herself and others!
Advocacy Alert: WI ABLE Program
ABLE (Achieving a Better Life Experience) accounts are a great new way for people with disabilities (or families on their behalf) to save money without harming their eligibility for important benefits like Medicaid or Social Security.
Unfortunately, many Wisconsin residents don't even know about ABLE or how to set up an account. That's because Wisconsin is one of just 9 states that has chosen not to operate or market an ABLE program. We can change this!
Bi-partisan legislators have just introduced an ABLE bill that would require the state Department of Financial Institutions to start an ABLE program. This will increase awareness about ABLE as a savings tool so people with disabilities and their families feel more secure about earning and saving more money in an ABLE account to put toward important extra expenses like transportation, housing or other support needs. You can learn more about ABLE here: https://www.ablenrc.org/
If you think Wisconsin should join the other 41 states with ABLE programs and make sure state residents with disabilities and their families know about ABLE here's what you can do:
Contact your State Assembly Representative and State Senator TODAY and ask them to support LRB-3165 and LRB-5380 - the ABLE bill!
Go to Who are My Legislators to find your rep's contact information: https://legis.wisconsin.gov/
Contact your representatives by January 24th (THIS Friday!!)
You can find links to the current ABLE bill draft and legislator memo here.
Thank you for supporting increased independence for people with disabilities!
URGENT Advocacy Alert!
Tell your senators to vote NO to the tax-cut bill, which will negatively affect your loved one with Down syndrome.
Wisconsin Senators:
Ron Johnson: (202) 224-5323
Tammy Baldwin: (202) 224-5653
**Please note, Ron Johnson is considering voting NO! We need to inundate his office with calls!**
Action Steps:
- Call, email, tweet our Senators, especially Ron Johnson! Include a photo of you and your loved one with an explanation of how the tax-bill will hurt your family.
- Go to your Senator's local offices this week! Meet with staff. Print out your story and leave it with them.
- Call your relatives and friends in other states and ask them to take action on your behalf. Main target states are Tennessee (Bob Corker), Arizona (Jeff Flake), Oklahoma (James Lankford), Kansas (Jerry Moran), Maine (Susan Collins), and Montana (Steve Daines). However, ALL Republican Senators should be blanketed with calls!
- One call or contact is not enough. Call them every day, multiple times a day, until the vote!
The bill is expected to go to a vote as early as tomorrow or Friday. Please call, tweet, email, and advocate every day until then!
Sample Phone Script:
Phone calls are proven to have the largest impact in swaying decisions (as opposed to letters, tweets, etc). It's very easy -- you just call the number and leave a message! Here is a sample script:
"Hi Senator ________:
My name is ________ and I live in CITY, Wisconsin, zip-code _______. I'm calling to ask you to vote NO to the tax bill. This bill is harmful for people with special needs, and will hurt the future of my loved one with Down syndrome, and my family. This bill cuts tax incentives to hire individuals with disabilities, raises taxes on people facing high medical bills, and eliminates the Affordable Care Act's individual mandate, among many other things.
Please vote no. Thank you!"
Wisconsin Long-Term Care Updates
Confused on what’s been going on over the past 18 months with Long Term Care (LTC) in Wisconsin? A member of the DSAW Advocacy Committee has summarized the important events for us:
February, 2015: The Governor’s biennial budget proposes significant changes to the Medicaid funded long term care (LTC) programs in Wisconsin. Changes include Family Care’s integrattion with acute/primary medical care and administration by insurance companies, and the elimination of the IRIS (Include, Respect, I Self-Direct) program, reducing the number of regions from 8 to no more than 3 and expanding Family Care to all counties.
February, 2015: Legislative Joint Committee on Finance (JFC) proposes an alternative to the Governor’s proposed budget that maintains the move to insurance company-administered long term, but provided for a self directed option that was the same as the current IRIS plan, expanded Family Care to all counties, decreased the number of regions to 5 and required consultation with stakeholders. It also required that the Department of Health Services present a Concept Paper to JFC, no later than 4-1-15, laying out the details of the new plan for vote by JFC.
March, 2015: Hundreds of LTC participants, families, providers and advocates attended public budget hearing around the state opposing the proposed changes to LTC and giving impassioned testimony on merits of the current system.
March – July, 2015: Participants, families, stakeholders and advocates from around the state rally to oppose these changes and ask that these changes be removed from the budget, and that stakeholders be part of the process of developing a long term care plan that would build on the strengths of the current plan and assure sustainability for years to come.
July, 2015: JFC passes their budget as proposed. The Governor approves it with line item veto changing the number of regions to 3.
July, 2015: 65+ members of the WI Long Term Care Coalition convened to create “The Stakeholders’ Blueprint for Long Term Care Redesign” to offer DHS, JFC and the state legislature constructive stakeholder input on LTC.
September 29, 2015: The first DHS sponsored, invitation-only, stakeholder meeting consisting of 30-40 stakeholders from around the state is held.
January, 2016: The first of monthly stakeholder meetings with the Secretary of DHS is held to collect input on the DHS Concept Paper. DHS invited a representative from each of the following: AARP, LTC Coalition, Disability Right WI, Board for People with Developmental Disabilities, Save IRIS, Independent Living Centers, Gwaar/ADRC’s and the Governor’s office.
February, 2016: LTC Coalition “Stakeholder Blueprint” is released publically.
March 31, 2016: DHS Concept Paper is delivered to JFC.
April – May, 2016: Hundreds of LTC participants, families, providers and advocates attended public hearings around the state opposing the proposed changes to LTC and giving impassioned testimony on merits of the current system. They continue their grassroots advocacy by writing, calling and visiting their elected officials.
June, 2016: Due to lack of support and the finding that the proposed changes will not provide the desired cost savings, Secretary of DHS, Kitty Rhoades, withdraws the Concept Paper.
June 18, 2016: Secretary of DHS, Kitty Rhoades dies.
Over the past 18 months, LTC in Wisconsin has been a pressing and often contentious issue that has mobilized thousands of people in the state to take action and make their voices heard. DSAW thanks its members for their support and action during this important time in the lives of those with disabilities. Your support, phone calls and letters have made a huge impact.
The Governor, DHS and the legislature are committed to moving forward with positive changes to the current long term care system. Some of the items they hope to implement are better quality and outcome measures, increased community-based employment, and integrating acute/primary care with LTC service to achieve better health outcomes.
For now, DHS is working on plans for these improvements, but much is on hold awaiting the Governor’s appointment of the new Secretary of Health Services. It our sincere hope that Governor Walker appoints a person who has publically demonstrated a strong belief in self-direction, person-centered planning, home and community-based services, integrated and living-wage employment, and commitment to collaboration with stakeholders and the public in developing a LTC plan that is effective, respectful, cost effective and sustainable for many years to come.
Election Day is Coming Up!
Election Day is less than 40 days away. Do you know where the candidates for State Assembly and State Senate stand on long-term care?
The Wisconsin Long Term Care Coalition's latest publication provides examples of the types of questions you should ask candidates about Family Care and IRIS.
Here is what you can do:
1. Attend a town hall, candidate forum or listening session and ask your questions in person!
2. E-mail or ask candidates questions using social media. Many candidates have Twitter and Facebook accounts.
3. Share this questions document with people you know and encourage them to ask their candidates where they stand on long-term care.
4. Submit a Letter to the Editor of your local paper about the importance of knowing where candidates stand on issues that impact people with disabilities and older adults.
5. To find out who is on your ballot in November, visit :myvote.wi.gov
Once You Know Where the Candidates Stand---VOTE!!
Early voting is now taking place in many Wisconsin municipalities.
There are 14 early voting locations in Madison and three early voting locations in Milwaukee. Check with your local municipal clerk to see what hours they will be open for early voting. You can find your local clerk's information here: https://myvote.wi.gov/en-us/MyMunicipalClerk
Don't forget, you will need to present a photo ID in order to vote! For information on Wisconsin's Voter ID law, visit: http://www.bringitwisconsin.com/
